I grew up in a small town, (very small town, by some standards) of 100 people, give or take a few dogs or guests who overstayed their welcomes. Everyone knew everyone, and that's the way it always was.
There was a lady in town who lived with her mom. She was older than me; maybe by ten or so years. Rumor was, she was being held by some kids when she was a baby, was dropped on her head onto the floor, and suffered brain damage. I'm not sure if the was the urban legend version of what happened, or the actual fact, but the end result was the same: a woman who acts like a child. She used to come into the cafe when I worked there as a waitress; always with her mom, always acting much, much younger, and always very sweet and innocent. They say she plays piano like a dream. I never had the opportunity to hear her, but knowing she came from a very musical family, I imagine that is true. For as long as I can remember, she has lived with her parents in our small town, in the same house.
A while back, her father passed away. Now, it is just her and her mom, living in the exact same house, the same street, the same situation, that they've been in since she was a baby. I imagine their days are very much the same, each day. Probably a schedule based on a need for routine and also a lack of anything different in a town of that size.
This spring, while home for my grandma's funeral, I saw her mom up at our church. She came directly to talk to me, and I could see in her eyes that she was aware of the beginning of my journey with Mas. We talked about small talk; weather, my gram, etc. She told me she would have to be moving on to a nursing home soon, and I glanced over at her daugher, wondering what was going to become of her now. She looked at me, and in that instant, I knew, all too well, the fear she was feeling inside. I'm sure she had been pondering that very question over the entire span of her daughter's life. I could also see in her eyes the extreme weariness that is just a given when you are caring for a child such as this. No matter how much you would try to add spice to your lives or adapt to some type of different days, the sameness would rule. It would have to. What else has a chance?
I wonder what she thinks of her journey. Does she wish it had been different? Does she wish she had institutionalized her daughter? Does she wonder how things might have been if that accident hadn't occurred when she was a baby? Does she envy her husband for passing away and moving on to a different sort of life/afterlife?
I wish I could sit down with her and ask her these questions. I imagine the answers might be sad. I imagine I already know some of her replies, and I also suspect some of the things she might say would surprise me.
I read once, on a blog when Mas was still a baby, that we are the only parents who hope we outlive our children. I thought, at the time, what an awful thing to say/think. Now, I start to see the origin of that thought. This man was saying, how awful would it be for us to pass away, and then leave the care of our teenaged child to a stranger. Nothing a parent should ever have to think about. Nothing a parent of a 'normal' child ever has to think about.
As lucky as we've been to have to deal with the things we deal with every day, this path is not easy. And, it is, a journey. No Point A to Point B stuff here. It has twists and turns, dark alleys and super-bright mornings, many tears and much laughter. Is it boring? At times, yes. (To have a creative mind and then be sentenced to a lifetime of the mundane, is somewhat comical....in a cosmic joke sort of way....) Intellectually stimulating? Not so much. Predictable? Almost always, when we're lucky.
I never would have guessed my days would revolve around diapers, especially 18+ years of changing diapers. If you would have told me that when I was 18, I would have laughed in your face. The fact is, though, my life revolves around diapers. Not to mention safety issues, personal grooming, laundry, chronic constipation, brain damage, germs, drool, spitting, medications, doctor visits, and behaviors. Revolves around. Hard to explain to the average person in any type of meaningful way. Let me take a stab at it....
Imagine having a 14 3/4 year old son, who is mentally stuck somewhere around 5-6, if we're lucky. (on paper, that number is much lower) With zero words. With chronic constipation. Who has to be thought of as a small child in terms of safety and feeding and meds. Whom doctors regard with a healthy dose of diagnostician envy as well as skepticism and questions.
Constipation alone, is almost killing our family. Chronic constipation, implies just what it says. Constipation, all the time....since birth. Constipated on breast milk, for God's sake. Which almost never happens. He lives on a plethura of medications, designed to help control the constipation. A schedule which can never vary, unless we want his constipation to get worse. Have you ever had to trim your almost 15 year old son's pubic hair, because so much crap was getting stuck in it that there was no way to clean it off? Have you ever had to wash your almost 15 year old son's bedding, twice a day, almost every day, because it is soaked, no, saturated, with urine? Can you imagine planning every trip, every outing, every single day, around diapers? How many will you need? How many wipes will you go through? Do you have garbage bags along to put the diapers and wipes in? Are the wipes dried out from sitting in the back of a hot car? Will there be a bathroom where we're going? Will there be an angry woman giving me a dirty look as I escort my (very old) son into "her" bathroom? Will he shit all the way down into his socks, or will it be contained in his diaper? Do you have spare clothes along? Spare shoes? Socks? When he hears the awesome echo in the bathroom, will he start vocalizing and piss off those angry women in the other stalls? Will someone be chilling in the handicapped stall, so we have to try to squeeze the two of us into a regular sized stall? This is just a tiny portion of what it's like for us to try to do anything; to try to go anywhere.
If you know a family, a "special" family, realize one thing....they are surviving. Surviving, only. They may act like they are thriving, may even say they are on occasion, but they are just getting by. Each day is a challenge and a sentence in sameness. And here, an important, pivotal point: There's not a damn thing wrong with sameness....they are so happy and relieved for their version of "normal", because God help them if their 'normal' spins into 'abnormal.' While most families' version of abnormal involves a hilarrrr-ious story that becomes part of the family's dinner party vernacular, a special family's version of abnormal generally involves doctors, hospitals, judgement, pain, sorrow, and suffering. Yes, normal and boring are generally what most special families want. Sameness can be a comfort, when the alternative is earth-shattering chaos.
There is just zero way to prepare for this parenting ride. No way to explain it, either. I will say this, though: nothing in my past has prepared me for how difficult this was going to be. For me, for Mas, or for our family. Even though he's 'doing great' and things 'could be worse', does not mean things are peaches and cream at the moment. Every moment that we have to go through with him makes me wonder, A) how did we ever get through the past almost 15 years, and B) how are we going to get through the rest of his life?
That said, we do belong to a club. A horrible club, that you would be wise not to want to be a part of. Enjoy your 'normal.' Enjoy where you are. Enjoy your family days out and your clean house and your bickering children. Know that everyone doesn't get to enjoy that stuff. Bask in the glow of your sameness, as much as possible. Because, somewhere, someone is wishing they could experience your version of sameness.